Tulsa Procedure and FLA for BPH
Posted , 9 users are following.
Hello everyone,
Haven't been around for a bit taking care of non prostate health issues and just read something about the Tulsa Procedure. Sounds a little like the FLA procedure Dr's Sperling and Karamanian were doing and in fact, I think the Sperling Center is going to be offering Tulsa soon, so maybe the same thing?
Anyone here have it yet? How does it differ or not differ from Dr. K's procedure? Is it covered by insurance?
Also, has Dr. K. finally published his study data? Any longer term reports here on how well FLA patients are doing? And lastly, anything else new and interesting treatment/procedure wise in the last year or so?
For those that remember me, I've been treating my bph with self catherization (CIC) for some time now. Still am. I started with almost complete retention holding over a liter of urine to CIC six times a day. Over the course of time my bladder started rehabbing to the point where I was able to stop CIC altogether with a normal PVR. Today, I cath anywhere from zero to six times a day depending on a number of variables. My PVR with normal voids is usually under 100ml which is about what you can expect from a surgery. Still happy with it but always thinking ahead so I came across the TULSA.
Thanks for any help.
PS signing into the site is now harder than getting into Fort Knox. Wish my bank
had such security lol What's with that lol
Jim
1 like, 34 replies
Mavrick jimjames
Posted
Hey esteemed Jim, first thank you so much for your helpful advice getting started with CIC. Just saw Dr. K yesterday and discussed these issues. Dr. K is a brilliant professional of great moments of clarity (cost was $250 out-of-pocket for the office visit). I only have 20 grams but the 3T MRI ($ 600) paid for by medicare). showed a prostate mass at the bladder funnel outlet neck that passes into the prostate. This was created by a FLA procedure, Rezum procedure or by other factors. What happens is when I get over 350 mLs urine volume, the mass puts a kink in the bladder funnel outlet neck about midway in the tail of the Y shaped bladder funnel outlet neck (very mild middle lobe). Dr. K gave tremendous clarity to the situation but said because of my previous surgeries that he would not be able to assure me that his FLA of the mass would help. He has done 3 TULSA but when we discussed that possibility, he was not enthusiastic. TULSA is pricy at 30K and has higher incontinence rate. I am weighing alternatives such as Holep or Urolift because of cost. What would you do if you had the money? Jim, please keep up the great advice, you are helping a lot of us. I still have a question about the speedycath flex and if the preservative is damaging anyone like it seems to give a urothelium afterburn to me. The FLA is still not covered by Medicare and is 20k at least. Caution as to the doc you choose for FLA, since my first one was a mistake, stick with docs with at least 100 different 5 star patient ratings. Look for specific details about how improvement is reported by patients as you search with a microscope through all the various rating formats and look for long positive essays like the one I am giving you, a 5 five star advisor on this forum. Run from Docs with multiple poor outcome 1 star reports, especially in this prostate procedural area of work because, as you know, for the prostate it is like real estate, location, location, location. Thanks Jim for all you do, Mav
jimjames Mavrick
Posted
Sorry the first FLA didn't work out. Can you tell me who did it either here or via PM. I spoke to someone in the office of a fellow in florida who says he does more TULSA's than anyone. Around 120. Charges 35K. They said they rarely do FLA any more because the TULSA works so well. I did not, however get any figures on retro ejaculation yet, so I'll take "works so well" at this time with a grain of salt.
Sometimes I do get a burn sensation with the Speedicath but I figured it was just micro trauma as they are on the stiff side. How many times a day are you cathing and what size? I started with FR14 but went down to FR12 which is a bit softer and more flexible. FR10 just didn't work. Interesting thought about the preservative. Maybe try it with an external lube like Surgilube and see if that makes any difference. What sites are you getting the patient ratings from? I know they are several. Sometimes I wonder if they are all real like the five star reviews on Amazon which can sometimes result in disappointment.
Interesting what you say about 350ml. When my bladder gets beyond that I can't do a natural void. Never had advanced imaging so I just assumed my detrussor muscles weren't strong enough to push that much out.
Cost aside, I don't know what I'd do with the current offerings and that's maybe why I haven't done anything yet.
For me, retro is a big issue, so HOLEP would be out. Some have been helped by Urolift but not crazy about having an implant. I would say maybe Rezum which has around 10% chance of retro but apparently you had that. Interested in your experience there.
Jim
uncklefester jimjames
Edited
Hi Jimjames, sad to see you back, and I mean that wishing you cured your BPH and had no need for this forum. I have been watching a drug called fexapotide triflutate. Its up for FDA approval. Google it. I have to admit, I think the FDA is slow walking it because its gonna hurt all the urologists that make money butchering men's prostates.
jimjames uncklefester
Posted
Thanks. Good to hear from you. I will look the drug up.
Jim
jimjames uncklefester
Posted
Definitely looks interesting. Will be waiting for some trial data.
Jim
uncklefester jimjames
Posted
Trial data has been out for a while. The company is waiting for FDA approval. Seems to have mixed reviews but very safe. If approved I'm going to try it. I'm lucky, I don't have a lot of symptoms. flow and no retention so I can wait it out.
uncklefester jimjames
Edited
If the censors delete my previous post, private message me and I'll send you the name of the drug
uncklefester jimjames
Posted
Forgot to mention, many of the FLA guys returned to pre procedure symptoms. I'm not sure if anyone has had lasting results.
TKM jimjames
Posted
Jim,
Welcome back. I read your posts about CIC 4 years ago and have been doing it since then.
About a year ago, I communicated with Dr K and Dr Eric Walser, who is also a professor at University of Texas. They both do FLA. Dr Walser said that the procedures are at least partially covered by Medicare and Insurance.
By the way my supplier for catheters started sending me bills, 3 months ago, for the part of their cost that Medicare/Insurance doesn't cover, which is $230 per month. Before that the supplier covered that cost and the catheters were free to me. I have been ignoring the bills and they keep sending the catheters each month.
Thomas
richp21 jimjames
Posted
Hi Jim,
Great to see you back on the forum. I've been mostly off myself as the changes to the forum have made it less user friendly for me. I had a PAE with Dr. Bagla about 5 years ago. Symptoms were somewhat better afterwards, but not as much as I had hoped. Symptoms have progressively worsened the last year or so. I've started taking daily Cialis (tadalafil). It's very effective, but has some side effects which I'm managing to control by taking just a half dose every other day. Like Unclefester I'm waiting on fexapotide triflutate.
Way back when, you and I had traded some posts about nocturia. I've since learned about polyuria also. I'd be interested in revisiting this ... perhaps start a different discussion.
Rich
jimjames
Posted
Hi Rich,
Good to see you again too. Sorry the PAE didn't hold. For those looking for relief without retro, etc, doesn't sound like much new has transpired with the exception of the injection I will be following. FLA still has mixed reviews and I calculated last time about 10% retro. TULSA sounds closer to 100% retro at least from one source.
Speaking of nocturia, did see one study recently that trialed a nasal spray, but don't know what became of it. For now, I just live with it, but yes, we did have some threads on some ways to mitigate.
https://pubmed.ncbi.nlm.nih.gov/29654805/#:~:text=Purpose%3A%20SER120%20desmopressin%20intranasal%20spray,controlled%20studies%2C%20DB3%20and%20DB4.
It's a shame because some men have procedures for the sole reason they don't like to get up at night only to find out from their doctor afterwards that the procedure was a "success" but they still have to get up at night because they have nocturia polyuria. If the doc had taken the time to test before...
Actually you can do a basic home test with a void log and get a good idea yourself. If a large per cent of your void volume is at night that points to nocturia polyuria.
I also had some success with daily Cialis but one week got intense leg pains at night. Never took it again. What kind of symptons did you get?
Jim
richp21 jimjames
Posted
Hi Jim,
I've gotten mild to medium heartburn during the day, not necessarily just after I take it. I've also had lower back pain, but I'm not sure if that's due to the tadalafil as I've had ongoing back issues. They do seem to have gotten worse, and is possibly being exacerbated by the tadalafil. Both the heartburn and back pain are listed as common side effects (also your leg pain). I lowered the dosage to 2.5 mg every other day and the heartburn went away. Of course at that dosage and frequency, the effectiveness is reduced.
Re: nocturia and polyuria.
From the web:
Nocturia is a condition in which you wake up during the night because you have to urinate.
Polyuria, it's because your body makes more pee than normal.
Sounds like to different but possibly related conditions. What's your current thinking on diagnosing and mitigating these?
Rich
jimjames
Posted
Often related and called polyuria nocturia. To simplify, just means you produce more urine at night than you should and therefore you get up to go the bathroom at night more than you should.
They can run tests, but you can get a general idea if you have polyuria nocturia by simply doing a 24 or 48 hour void log. Just record the time and amount of each void. If more than 35-40% of your urine volume is at night then you probably have polyuria nocturia.
I think we've had some threads on mitigation but a few ideas are to reduce fluids three hours before bedtime, moderate caffeine and alcohol use, take an afternoon nap, elevate your legs, compression stockings, go over timing of medications especially diuretics, exercise regularly. That said, I have tried all of that and still have polyuria nocturia to one degree or another. It's pretty common as we get older. I believe there also may be some nocturia specific nasal sprays that can help but haven't looked into that yet.
Jim
richp21 jimjames
Posted
Thanks! Is there a way to determine how much might be due to LUTS and enlarged prostate as opposed to just nocturia if both seem to be involved?
Rich
jimjames richp21
Posted
This may be a duplicate because once again I am having technical difficulties with this forum!
First, getting up at night might be either nocturia polyuria, LUTS, an overactive bladder or in many cases some combination.
The void log is a good start. Say you find out that your total voids overnight are 800ml and you get up once per night. So here, even if you had a perfect bladder you would still be getting up at least once per night because the bladder won't be able to hold 800ml comfortably with the exception of a very distended bladder. So this points to a polyuria nocturia issue.
Other tests such as an offer bladder scan will be helpful determining post void residual and a real time scan as in a bladder kidney study will pick up other things such as if your bladder is distended, etc.
Jim
richp21 jimjames
Posted
Thanks!
TKM jimjames
Posted
There was someone on this site who posted that compression socks helped reduce his nocturia. The theory was that they reduce fluid build up in the legs during the day, so there would be less water to eliminate at night.
There is a theory by two doctors from Isreal: Gat & Goren, that proposes that BPH is caused by Varicoceles in the testicle. Varicoceles are basicaly varicose veins in the testicles. The varicose veins do not allow blood to flow back to the heart properly. Instead it pools in that region and allows overload of testosterone, from the testicles, in the prostate, causing BPH. They found that when they corrected the Varicoceles, in order to correct infertility , the person's BPH also improves.
If the GG theory is correct would it be possible to treat BPH by treating the varicose veins with compression socks, and better yet compression tights ? Its seems like my BPH symptoms have improved slightly since wearing compression socks every day.
It's all a theory, and my symptoms could be influenced by placebo effect, but I would be interested if any one else has noticed any difference while wearing compression socks regularly.
jimjames TKM
Posted
I posted about compression stockings as one of several interventions for nocturia polyuria. Tried them for awhile but not sure it made a difference, so maybe you read someone else's post where they helped.
Gat Goren procedure has been around for awhile. Interesting concept but not a lot of data plus you have to go to Israel to get it.
Jim
uncklefester jimjames
Edited
If I recall correctly someone on this forum did the Gat Goren procedure or was trying to have it done. He found a Dr. in the USA that would do it. I'm pretty sure it did not go well for this person but I can remember for sure.
I think his name was Howard